It has only been a few hours? It feels like 8 days already.. #3

We finally had a time for the contrast xray.. Early afternoon. Isaac was sleeping comfortably. He was sucking on a pacifier like a mad man. That was the most action I had seen in his little mouth. As you could imagine him being all backed up made him not hungry. I mean come on guys if you couldn't poop would you want to eat anything? (Trying to have some humor here :) ) The catheter was basically allowing him to poop. It looked so uncomfortable but I knew his little tummy felt so much better. As for the suction tube down his throat, well that was for the birds. He didn't seem to mind it though.. At least not for now. 

We decided to leave the NICU for the first time since he had been admitted. Thought eating was a good idea. I felt guilty eating because my son couldn't eat. So why should I? I mean now that his stomach felt better I'm sure he wanted to eat. But because they didn't know what was going with him, he couldn't eat at all. But we decided to walk back to our room and then go to the cafeteria.  We didn't even make it half way and the NICU was calling my cell phone. I totally freaked out. To this day I still have NICU programed in my phone. They told us there was an open spot for his xray immediately and we needed to get back there. I was so happy because that meant answers sooner, but then I got scared. Um is his condition getting worse, is this an urgent matter now? I don't think I could have walked any faster with out breaking out in a full speed run.

When we got back there they told us they were waiting for his transport. What? Transport? Where is he going exactly. They told us the transport babies in an enclosed little bassinett.. Kinda looked like a mini incubator. It allowed them to keep all his machines going.. Ah makes sense. I mean did I really think they were going to unhook the 5 machines he was hooked up to? Just as that thought left my mind, transport arrived.

He had 2 NICU nurses escort him to xray. And then there was the radiologist and his 2 assistants in there. The room was packed. We had a little celebrity there. I could barely keep it together. I was such a mess. Crying hysterically, could barely even stammer any words out. Luckily my boyfriend Jose is more level headed than I am, so he kind of kept me focused. I really thought this xray would be fast and easy. I was so wrong. They had to strap my little baby down with his arms above his head so he wouldn't move. If he moved they wouldn't be able to get all the films they needed. I felt like a terrible mother. A failure. My baby was screaming his head off and I could do nothing for him. This whole process seemed like it took forever. I don't know how I survived that but I did. It broke my heart into so many pieces. I just wanted to pick him up and take him home. I had never "planned" for this to happen. This is where I stopped planning things in my life because when you plan things they always seem to never pan out that way.  That was definitely the worst moment of my life.. I had to step out because I just couldn't take it. He was crying for me. For me to stop them from doing this to him. What a rude awakening to the world. This wouldn't be the first time he would be hurt and be in pain. I wanted to take his place so desperately. I kept asking God to comfort him and to protect him. And also for him to forgive me for putting him through this. But I knew that this was to make him better.. I had to keep that at the forefront.

I was hoping to get answers immediately. I was trying to read all the medical staffs faces in there but I really couldn't tell much of anything. I was told after the radiologist did his review and the surgeon did hers, someone would let me know. Let me know? I mean can't they just tell me now? It wasn't like a quick look like a broken bone? Wait? They obviously didn't understand who I was. Waiting is not in my vocabulary. Impatient was. Ha, after that day I learned that I had to be patient. You learn a lot of things very quickly when you become a parent.

When we arrived back in the NICU we sat by Isaac's bedside and waited. I'm not sure what time we heard anything but when we did, we kind of knew what we were going to hear. He needed to have the suction biopsy to confirm the diagnosis but the surgeon was 99% it was Hirschsprung's. She told us tomorrow, which was Tuesday the 11th of October, she would do the biopsy but it would take at least 2 days to get the results. Another waiting game. In the meantime, nothing with his care would change. So there I sat, all day, all night watching my baby. I was able to hold him most of the time.. I was so thankful I could hold him. It was difficult with 3 leads, 2 IV's, a tube in his mouth and one coming out of his rear but I made it work because I know he needed me to hold him and cuddle him. He slept mostly but when he would open those eyes and see me there, he would just stare at me. I knew he was being strong for me. I smiled at him all the time. I never liked him to see me crying. I felt like he would do better if I kept my spirits high and smiled a lot. I told him about his nursery at home, about his monkeys on the walls, about all the toys and clothes we had for him. (Side note: I am sitting here in tears reliving this) But telling him all this made me so sad inside. He was supposed to be home enjoying all of this NOW. Not laying in a bed attached to all these machines. I just wanted to fast forward to that day we would bring him home.. Whenever that was..

We can still go home right? #1

October 10th - Isaac is 2 days old. For the most part he seemed like a normal baby.. But hey, what do I know? I'm a first time mom. Other than the fact he has not been interested in eating much of anything, he seemed just perfect. I couldn't believe in a few short hours we would be taking our long awaited baby home. I hadn't gotten much rest because I was just too overjoyed about him finally being here. I just wanted to cuddle him and stare at him. 

Throughout the 2 days after his delivery he had been spitting up a lot. Of course, being me, I asked the nurses if that was normal for a new baby. They told me during delivery babies swallow amniotic fluid and that was the reason he was spitting up and also not very hungry. Seemed odd to me but what did I know, right? Well at about 5am, when Isaac was 2 days old, the day we were supposed to go home with our new baby, he spit up yet again. This time it was green and looked seedy. I was going to just blow it off because they kept telling me his spitting up was because of the delivery. They never mentioned that green was NOT ok. Thankfully I did call the nurses in and showed them the cloth where he had spit up at. The next series of events happened so fast I can't even remember much of anything.. 

They had me walk him down to the nursery on the postpartum floor so they could check his tummy out. Luckily, our pediatrician was on the floor doing her rounds early that morning since it was a Monday, she was checking out all her new babies from the weekend. She was told what had just happened and she said they needed to call for a NICU nurse to come up and bring him down for assessment. Was she serious? MY healthy baby needed to be assessed by the NICU? I was not prepared for what I was about to see and be put through in the NICU.

The NICU is a very scary place but also a very good place for babies that need the intensive care. As we walked into the unit I was in total shock. There were monitors going everywhere, screens everywhere, nurses and doctors everywhere, beeps and noises everywhere, the lights were dim and it was almost like organized chaos. This was nothing like I had ever seen. It was not like a typical hospital unit. There were no individual rooms, all the babies were grouped in 4 areas. I assumed by what condition they were in. Isaac was brought to a corner unit and put in a little bassinet. My heart was pounding, my head was aching, my body was terribly sore from just giving birth, I was exhausted, but I had to know what was wrong with my baby. No one was saying anything.. 

I remember when we first met Dr. Golden. He came over to Isaac's bassinet and told us he was the neonatologist in the NICU and he would be taking care of Isaac. He said they were going to do an abdominal xray immediately to see what was going on. I asked why they needed to do this xray and what they were thinking it was. He told me that because of the green bile spit up, and his distended (which is now a very familiar phrase for us) abdomen that they were thinking he could have some type of intestinal blockage. Before he could even finish the xray machine was at Isaac's bedside. I had never seen a mobile xray machine and I had no idea they could do this at his bedside. Technology. This was the beginning of our journey with Hirschsprung's Disease...